30 Days of PH: Familial PH

30 Days of PH: Familial PH
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Day 19 of 30 Days of PH⁣ ⁣Topic: Familial PH ⁣ ⁣This is Kari’s story @karijersey ⁣ ⁣ In 1999, my family and I were introduced to PH. My mother was diagnosed at the age of 35. At that time, that weren’t very many options for her. The doctors told us that her case wasn’t hereditary. But my sister and I got checked around the ages of 15 and 16 just to be safe and were in the clear. Sadly, my mom passed away in 2007 when I was just 21.⁣ ⁣ ⁣ On June 11, 2016, my then 3-year-old, Ophelia, passed out at her birthday party. We immediately called the ambulance and were rushed to Strong Hospital in Rochester, NY, where we spent two weeks before being transferred to CHOP. She was diagnosed with PH. We were completely shocked by this news. PH had crept into our lives again. ⁣ ⁣ ⁣ They asked if I had been tested, I was diagnosed with PH a month later. I truly felt like our lives were shattered. I was angry, confused, devastated, and incredibly worried about what the future would hold. Especially for my baby, I kept thinking, “ “She’s so young. I’ve seen what this disease can do. Surely she won’t have much time”. The first year was a roller coaster for my husband and I, but we have amazing family and friends that have been there for us every step of the way. That makes all the difference in the world!⁣ ⁣ ⁣ Ophelia has been able to transition from the pump to oral medicine and we couldn’t be happier. We certainly still have overwhelming moments, but continue to stay strong because we can’t change our diagnosis, so we just embrace it. ⁣ ⁣ ⁣ I watched my mom go through so much growing up. She never once let PH stop her, even when there were times she probably should have. I know for a fact that she is where I get my strength from. She is a huge part of who I am and I am incredibly thankful and proud of that. ⁣ ⁣ ⁣ Today, Ophelia and I are doing well. I hope my story brings strength to you. I’ve witnessed the worst of this disease and I hope I’m here to witness the best- a cure!⁣ ⁣ #30DaysofPH #familialPH

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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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